Hello ; new here : I have an appointment tomorrow... - My Ovacome

My Ovacome

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Hello ; new here

fuscha21 profile image
10 Replies

I have an appointment tomorrow with a gynocologist/oncologist. Does anyone know what I can Expect at first appointment? Cat scan & uk

ultrasound done. Fluid filled mass found in my pelvic area. Between my uterus & left ovary. Ca125 test high elevated number. 80. Does anyone knowk what next step is and what I can expect at first appointment?

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fuscha21 profile image
fuscha21
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10 Replies
trix70 profile image
trix70

Hi, if I read it right you have had the ct and ultra sound done, so it will be results and a plan of action, and I wish you all the best. Trix

BJ_UK profile image
BJ_UK

Well, at my first appointment I saw a registrar, who gave me a physical examination. I was told that there was a 75% chance that my complex cyst was malignant and was introduced to my CNS. (I think that stands for clinical nurse specialist.) I was also told that I needed to have a total abdominal hysterectomy (TAH), bilateral salpingo-oophorectomy (BSO) and omentectomy, and the likely length of the incision was demonstrated during the physical examination. I was given the date for the operation, which was 18 days from then, and given appointments for a CT scan and a pre-op assessment. As it was actually a registrar I saw that day, I was also given an appointment to see the surgeon who would be doing the op. Following that first appointment the CNS sat down with me and my husband, and answered our questions. She also gave us various booklets to read.

I don't know exactly what will happen at your first appointment, of course, as it will depend on exactly what they think is wrong and what they plan to do about it. But at least my experience gives you some idea what might happen.

I would encourage you to take someone with you if at all possible. Write down any questions you already have in advance - it helps to use a notebook for this so that you or your companion can jot down the answers to your questions. Be sure to take a packet of tissues - if you get the sort of news I did you may well need them.

Do remember, though, that your problem may not be cancer!

Wishing you all the best,

Barbara

thesilent1 profile image
thesilent1

Just want to wish you well for tomorrow. I note you say fluid filled cyst. A simple ovarian cyst, very common in women, they can come and go all the time without the woman even knowing, is filled with fluid alone and this can cause your CA125 to rise. I hope this is the case for you. Take it one say at a time for the moment. Ann x

fuscha21 profile image
fuscha21 in reply to thesilent1

It's a fluid filled mass. Possibly some sort of abcess or tumor. They have already said it's not a cyst

They will just tell you the results of what they have found. They will also tell you what they could possibly do, to help your situation.

Regards

Steadyteddy

Decca4Ever profile image
Decca4Ever

Don't worry! (Not till you have to, which might never happen.) Ca 80 is not that high. Some people have scores of 8,OOO. They can't tell from just a scan whether it is malignant or not.

As Ann says, lots of women have fluid filled cysts. 95% are benign. Ca levels can be raised for all sorts of harmless reasons. Some cysts go away on their own. Sometimes they just keep an eye on them. Sometimes they take them out to have a look at them in the lab.

I had a huge cyst/tumour, taking up most of my abdomen, Ca 125 was 130, and I'm in a high risk age group. It was something called Borderline and 'cured by surgery'.

It's v good you're seeing a Gyn-Onc. They have the experience to know what they're most likely dealing with.

Stay away from Google. As Ann says, 'One day at a time'. Fingers crossed all will be well for you.

Sue

Sunfleury-UK profile image
Sunfleury-UK

There's a good page on the Ovacome website called 'questions to ask' - ovacome.org.uk/my-ovarian-c... it may be worth printing it out just in case! But as others have said, it's one step at a time and shall hope yours is a good result! Best wishes S x

sharon62 profile image
sharon62

Try not to worry about Ca125 test my reading was over 100 and then on retest normal. All tests are done so they can get a better picture about what`s wrong and how to treat you. Had the same cyst with other complications with elevated ca125 had all tests and for me because of my age had hysterectomy 4 weeks ago. I can now say with way I am recovering, best decision I made. Good luck

Hope by now you got your results and that you are doing okay. If you needed treatment, there are plenty drugs out there that will work and put you in remission. If all went better still that is great, do let us know how it went

middlecr profile image
middlecr

Hello. I went to my GP with a need to pass urine and a lump in my stomach. Following a CA 125 of 139. I also had an ultra sound scan and CT scan. A Hysterectomy was scheduled and a frozen section performed whilst I was asleep to determine what else should be removed, I went on to have ovaries, tubes, Omentum and pelvic nodes removed and samples sent to histology as the frozen section showed the samples to be 'Borderline'. This was completed 2 weeks ago. I am now waiting for histology results in another 4 weeks. The CT scan showed no spread so the Gynae oncologist felt the mass was contained. Having told a few people/ friends, it is in fact quite common, and is not necessarily malignant even with a raised CA 125.

Take it very slowly if surgery is scheduled and absolutely no lifting ( that's what I keep being told!) drink plenty and don't get constipated! Accept all offers of help post surgery as I have slept a great deal and at the beginning had little energy to do anything . Good luck!

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